Monday we celebrated Sarah's 20th birthday with a picnic at the Eiffel Tower. Today we spent the morning at Necker.
Our first meeting was with Dr. Couloigner (the ENT) who checked Parker's ears and informed us that there was liquid behind the eardrums and this could cause a problem for the implant surgery. As such, prior to the implants, they will be putting tubes in his ears.
We then talked to Dr Lacourreye (the ENT who does the ear tests) who suggested that we get Parker fitted with hearing aids as soon as possible. She anticipated our question as to why we would do this given that he is deaf, by explaining that it would be good to stimulate the auditory nerve, see if he does have any hearing capability at all, and help him get used to having something attached to his ears. He has an appointment on Thursday evening to get these.
We then went to neuro-surgery who took us down for a CT scan-- I have somewhat lost count of how many CT scans he has had but I think this is the 6th or 7th. The scan showed that the ventricles still have too much fluid in them and they will still need to do the shunt surgery. The amount of liquid has not increased, and the scan showed the sub-dural liquid pocket has actually diminished, so they do not think this is urgent but it needs to be done prior to the implant surgery. They also arranged with the ENT's to do the tubes at the same time as the shunt so he has one less time under general anesthesia. The surgery is scheduled for April 21st and we have to check him in to the hospital the morning of April 20th to do another scan.
It was a long morning for us, and tiring for PJ. We always hope that one day we will go to the doctors and they will say "looks good, we'll see you in six months for a check-up"-- that was not the outcome today.
We question the necessity of some of the procedures and prescriptions that they recommend to us. Parker has a special status in France because of his condition under which all medical expenses are 100% covered as long as a doctor signs a prescription for it. While this is great for us financially, it sort of feels like someone has called "open bar" on all aspects of medicine and we are trying to establish the line between things that might be helpful from those that are necessary.
On the positive side, all of the doctors seem very keen on the fact that we need a break and have facilitated us going on vacation. The neurosurgeons cleared Parker to go and even moved the surgery off by a few days so that we can have a complete week. Dr. Quijano (who is Spanish & often wants to quiz Renee on her So-Cal acquired Spanish linguistics skills) from Garches is providing us with names of hospitals in Spain and medical prescriptions in Spanish so that if we run into trouble we can get help.
Culturally this is still foreign to us. We feel like we are abusing a generous social system by accepting hearing aids that may end up being largely superfluous, guilty for the fact that we come off as needing to take a break and escape as opposed to being able to push through and get things done. In large measure this is more dealing with our own insecurities as in France this all seems to be 'normal' and is accepted as being perfectly reasonable.
Renee's Note: On a more spiritual note, every 6 months our church congregates either in person or via satellite at meeting houses throughout the world, or like us, we skip the church houses & cuddle up in front of our computer to listen to and watch spiritual messages from our church leaders. With snacks & coloring books for the kids and the live-internet-feed, we noticed recurrent themes of suffering & adversity & endurance. I have been thinking constantly for the past 24 hours of a scripture that was stated at General Conference this past weekend. It is found in 2 Corinthians 12:8-10: "For this thing I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee:for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then I am strong." I feel so very weak, and yet am strengthened by our friends & family member's love that has so utterly & completely encircled us these past several weeks. Every day I am amazed by the teaching, loving hands that guide us through this process and the lives that touch ours throughout and along the way. I feel weak in body but strong in spirit. I prayed for 7 solid days night & day that Parker would not need this new shunt surgery. The fact that he does actually does not shake my faith at all. I know that I had the faith to make it so--if it was God's will. I still pray. I know that He can, and still pray that He will heal Parker. This makes me stronger...not because we continue to pray for more miracles, and exercise our faith in searching for more, but because we are willing to accept no more, and somehow find peace in that amongst all of these struggles. And strength, too.
